Feb. 1993 the shadow Health Secretary, Mr. David Blunkett M.P., looking
myodil problem, made four demands of the Government:
1. A Public Enquiry should be held into the matter.
Myodil Arachnoiditis to be made a notifiable illness, with benefits claimed
under special rules, as for terminal illness.
Training for doctors and medical staff, in diagnosis and treatment.
are reasonable demands, based on justice and the needs of the people
It is still imperative that these actions are carried out, to alleviate
suffering. The purpose, of these case studies is to illustrate the
problems still facing myodil victims and to reinforce the points about
Interest. There are six case studies (none longer that two pages); each
meant to illustrate an area of interest and debate.
The Casual Procedure: illustrates that a very serious procedure came to
carried out routinely and for reasons far outweighed by the risks.
The Search for Relief: illustrates the futile search for pain relief
lack of medical knowledge.
It’s All Psychological: illustrates disbelief by the medical
caused by lack of acceptance
of the condition.
If Been Told the Risks: illustrates that myelograms were carried out
without informed consent.
Nobody Listens: illustrates distrust and conflict between patients and
Litigation Prohibition: illustrates legal boundaries set up that prevent
1 THE CASUAL PROCEDURE
case is meant to illustrate how the procedure was carried out
casually, and for relatively minor reasons.
1974, Mr. A. was an eighteen-year-old soldier who had complained to the
that he had a mild nagging ache at the back of his knee. During this
weekends, he was doing thirty-five mile hikes, with full pack and kit,
extremely rough terrain (Brecon Beacons and Dartmoor) whilst carrying
normal duties during the week.
was sent for physiotherapy on his knee, but, because of his mobility
amount of work he was doing, the physiotherapist suggested that there
nothing wrong with it and passed him on to another doctor who decided
investigate using a myelogram. It must be reiterated that this was an
fit soldier who was carrying out his normal duties during the week
extra volunteered work on weekends. Also, it should be noted that, at
he was below the age of consent.
soldier was inquisitive about the procedure: in answer to his questions
told that myodil was completely safe, and would be excreted out of the
within a few days. More that thirty years later, the dye is still
The only side effect that he was warned about was, that it was possible
mild headache afterwards, but which would soon disappear.
myelogram was given; his description of this procedure is similar to
underwent this procedure: ‘a harrowing ordeal, where I
green bile all
over the nurse who was holding my hand.' The pain and headaches that
were incredibly severe. As a result of the myelogram, a laminectomy
followed. Recently, doctors have looked at the original investigation
and have written that there was no reason for any procedure to be
carried out at
A. states that immediately on awaking from the operation he knew that
was drastically wrong. Imagine his terror: he had walked into the
and healthy, with the exception of a mild ache in his knee; he woke up
intensive care in incredible pain, that not even the morphine would
unable to move his legs without extreme difficulty or agony. He spent
in hospital and nine months in a rehabilitation unit learning to walk
After this time he was returned to unit to finish his radar training;
never regained his ability to walk without a limp or pain. He had a
trade working on a new missile system of which there where too few
the army were willing to keep him on without allowing him to take up
duties. In 1978, the army, keen to get the soldier back to normal
decided to do another myelogram to see if there was anything else that
done. This proved to be more of an ordeal than the first. Only a couple
after the myelogram, he was sitting watching the hospital TV when he
started to get painful back spasms. He lost control of his bladder; and
nurse, with help from other soldiers, managed to get him to his bed. By
whole body was jumping in incredibly painful spasms. It was a sore
emergency operation was performed to release pressure on the bottom of
spine, and records show his heart failed during the operation. After
duty at work, a relatively healthy Mr. A. had walked into the hospital
quick investigation to see if there was any way to improve his
situation; he was
not expecting an operation (he would have refused one) or another six
was the end of Mr. A's career and the beginning of a lifetime of grief,
disappointment and pain. We had a fit man, who, although underage, had
given a dangerous, invasive procedure, without ANYONE being informed as
perils involved -- the Hayman report shows that these dangers and risks
that time, there was no way to sue the crown for negligence or damage
service and he is not allowed to sue retrospectively. He is in receipt
pension, but the Pension's Agency do not recognize any myodil symptoms
those symptoms below the lumbar region and his myodil symptoms range
to toe. He is very bitter about the fact that he can get no redress of
grievance; no recognition of his condition, or even a fair hearing. In
the age of 39, Mr. A. was forced to retire due to ill health.
is, of course, more evidence of the casualness in which myelograms were
for instance: one fellow had four myelograms; another had his three
in the space of several weeks (surely completely unnecessary). A young
her first injection at the age of 12 because her toes were numb; she
had no backaches or other problems at all before the injections. Her
Consultant has argued that the myodil injections just weren't
are not the life threatening, debilitating conditions requiring
surgery as the Hayman report claims; and to date, the M.A.G. have not
anyone who was informed of the dangers. Remember, instructions for use
warn doctors to use glass syringes (it eats through plastic) and to be
of spillage (it burns through floor tiles) and this corrosive liquid
injected into the nerve centre of the body, the sensitive spinal canal.
a very dangerous procedure with doubtful advantages; patients had a
right to be
informed of the risks.
2 The Search for Relief
2 illustrates the traditional journeys taken by a myodil victim to find
relief. Lack of myodil knowledge by the authorities (doctors, pain
etc.) severely hampers this process.
B. had a myelogram in 1976 and recent x-rays show the presence of the
still in her body. This is part of her story, in her own words.
'....... I am severely
disabled; I have to get around when I can
elbow crutches. I am also in
and out of the pain relief clinic
something to try and give me a little relief from the pain; but it does
very long and then I am back in again. This has been going on now for
since I had that dye. It has ruined my life completely in every way. I
sleep because of pain all the day and night.
I go into hospital every four
months for lignacine infusion to
help me; it doesn't do much for me but I am grateful of a little bit of
I have to rely on my carers to look after me, my Son 's daughter in
law, who is
a nurse, and friends and family. I don 't very often go out anywhere
I am in pain all of the time with my back and legs because I can't sit
and [although] I can stand very good with my aids, I have to sit down
few minutes because of the severe pain in my back and legs. The pain
into my ankles and toes and I have to wear supports on my legs and
I was told, by many
consultants I have seen, [that] no matter
what I have
done to get relief from the myodil pain, it will not help me at all. I
all over the country to try and get help for pain and this myodil is
thrown at me in a nice way but his does not help me. [Both] Oswestry
and a hospital in Liverpool tell me the same [there is no relief for
and I have got to accept it because it won't go a way.
I had to retire from nursing
because I could not do my job: I
had to have
a lot of time off and I couldn't even lift or push a wheelchair. The
I have to take to help my pain is morphine, coproxamol, diazepam, and
I am also going into hospital for a morphine catheter trial because the
tablets are not controlling pain long enough (they last four to five
instead of twelve). I have had to have a chair fitted up my stairs as I
having a lot of falls.
Some days I
don 't know how I carry on, because I am just getting worse every day.
As it is,
I have no social life at all because of all this. What has happened to
wish I'd never gone through it [myelogram] in the first place, because
told anything about the drug [myodil] so I went ahead and had it
because I was
told I was going to get better for ever and not have the problems I
points to note with Mrs B's case are that she wasn't told what to
expect and she
describes the typical uphill struggle to find pain relief and the lack
palliative care available for myodil victims. Many doctors do not
true nature of myodil-induced problems. One old lady who wrote telling
pain, states that her doctor prescribes only paracetamol: this is quite
horrifying, as the usual myodil pains will not be touched by this
addition to the above, a great many myodil sufferers visit pain
psychologists and psychiatrists. Chiropractors, osteopaths,
other alternative therapists are seen at their own expense. Other
to myodil victims, are; chemically induced meningitis, suicide; health
due to medication, general mental illness, early retirements, severe
hardships, lost jobs and houses, and divorce.
victims are living appalling lives with very little they can do about
most of these problems stem from myelograms. They complain of lack of
or even respect, from doctors (one fellow after refusing a second
told that, instead, he was to have a radiculogram: this turned out to
pseudonym for a myelogram). Hospital authorities lose records relating
and people who have managed to get hold of myodil reports have often
had to go
through the MP’s to do so.
problem, which may explain some doctors' behaviour, is the lack of
evidence. This takes two forms, one the disappearance of records, and
recent x-rays tend not to show up very much myodil in its victims. This
because modern x-rays are often taken up to 30 years or more after the
toxicant was injected and the body has managed to dispose of most of
however, the damage has been done, it is just hidden.
a world where it is painful to sit, stand or lie down, it would be
doctors, psychologists, psychiatrists and social workers understood the
nature of the problems facing myodil victims.
3 It's All Psychological
C. shows how the medical profession generally views arachnoiditis
There is also the hint of how the legal profession treated myodil
money off them and then give strange reasons to withdraw).
working as an SRN I injured by back. I was given physiotherapy but had
improvement. A myelogram was carried out at Newcastle Hospital in 1970
surgery three days later. Following the myelogram I suffered severe
but I was told that was due to the lumbar puncture. After surgery I was
discharged from hospital with no follow up appointments. In Jan 1971 1
readmitted to hospital with severe back pain and stiffness. I was told
there was no reason why this should have happened, I was given the
that they thought I was putting it on and I do now know that it was
my notes that they felt that there was, 'a strong psychological
element' to my
symptoms. I was given physiotherapy, muscle relaxants (valium) and
was given no support from my employers, the Cumberland Infirmary, and I
that they also thought I was putting it all on. On my return to work I
allocated a geriatric ward and it was only after the intervention of my
consultant that I was allocated lighter duties. I improved slowly, but
fully recovered my strength or became pain free.
September 1971 I married and moved away from Carlisle, but could not
six months: the pain continued and I was prescribed painkillers and
During this period my memory is very vague, I put this down to the
Valium I was prescribed. I have whole incidents in my life I cannot
May 1972 I secured a part time job in the A&E dept. of Kendal
Hospital, however, I soon found my back beginning to deteriorate and I
referred to Newcastle Hospital. X-rays showed 'residual myodil in the
sacral spinal canal,' but this was not sufficient to allow re-screening
second myelogram was performed on 22/11/72. 1 cannot remember any of
discussions that took place at this time; but I was in so much pain I
let them cut my head off just to get rid of the terrible pain.
the myelogram I again suffered severe headaches. Surgery took place
I was again discharged on painkillers and muscle relaxants but no
appointment. In my notes dated December 1972 my consultant orthopaedic
raised the possibility of Arachnoiditis; though I have no recollection
being put to me or being explained to me. Once again my back seized up
another x-ray showed myodil residue present. Again I was told that
there was no
reason for this to have happened and was made to feel I was putting it
on. I was
given physiotherapy, Valium and painkillers. After discharge I resigned
to a life with a 'weak' back and just having to put up with it.
always felt that they were treating me as a young woman and young
not have bad backs and I was just putting it on. When I went to the
would complain of other symptoms [these were provided]. There were
times when I
was in pain but had relatively good movement in my spine and this was
thought through. The doctors met me with no response. There were times
thought I was going mad. There were times when I began to think I
imagining things. I have sat many times with the pain asking myself,
sure there is pain and you are not imagining it?' But I then had to
there is real pain.' I got to a stage where I tried not to bother with
but when things did get bad and I worried about my back I would pay to
someone privately in the hope that if I was paying they would at least
me, but it did not work. I always came away in tears.
the years as usual I had my good times and bad. I suffered from back
pain and greatly from migraine and as time went on the bad times became
frequent. In 1990 I read about the myodil problem and recognized the
immediately. I contacted a solicitor who sent for my medical records
and had an
MRI scan on 15/10/92. The problem here is, that despite previous
residual myodil and arachnoiditis, this latest doctor said that there
definite evidence of arachnoiditis. I pursued the case no further as I
afford the cost. Yet again I had been made to feel it was all
June 2000 1 had another scan and was told the results showed evidence
arachnoiditis possibly caused by the previous myelograms! I was told
nothing that could be done and that I just had to keep as fit as I
could. As a result of this latest scan, I once again contacted a
solicitor in an
attempt to get compensation and was told that as my myodil had been
1973 I had no claim!!!!!
C's story is a common one amongst myodil casualties: disbelief at the
wide-ranging symptoms; conflicting diagnoses; bizarre solicitors advice
suggestion of psychosomatic symptoms.
4 If I'd Been Told the Risks
E. had two myelograms in the late 1970's; the result was that, at the
age of 38
her working life ended. Mrs. E. went to hospital in 1978 complaining of
consultant informed me that I was to have a myelogram. He stated that
it was a
dye injected into the spine for x-ray purposes. After the x-rays,
attempted to remove the dye. A nurse present at the time, informed me
task was being attempted, whilst at the same time she expressed how the
were struggling to complete the procedure. As a result the dye was NOT
I suffered the most horrendous headache and sickness; more procedures
for which the records are missing. During this time I was unable to
up, in fact I was bed fast, virtually unable to move and completely
the hospital staff, for whom I have nothing but praise for. Eventually
allowed home under my G. P.'s care. From then on I was unable to walk
and at this time was virtually house bound.
have a number of problems resulting from the myelogram: arachnoiditis;
pain and limited mobility; spasms at night interrupted my sleep
increasing medication for pain relief and inflammation; Stress due to
to live my life to the full or perform the ordinary things that I'd
the injection; stress due to sorting out myodil related legal matters,
struggle to obtain my medical records since 1992.
the expenses incurred for the M. R.I. scan and private consultations
were met by
me, and due to the spiralling costs I regrettably had to draw my claim
close. Another problem was that a consultant advised me that the
was in his opinion caused through surgery. How then was it, that the
and side effects were present before the surgery? I feel that one
covering up for his colleagues.
I had been made aware of the enormous risk involved in myodil, I would
have jeopardised my health by having a myelogram. The risks involved
and recognised by health officials in this country and all over the
NO ONE bothered to outline these to me.
had walked unaided into hospital with backache little knowing that one
would ruin my life and leave me disabled, and with the fear of what's
to come in
5 Nobody Listens
doctors come across myodil casualties there are often problems because
Adhesive Arachnoiditis doesn't fit their orthopaedic model of the human
The lack of knowledge of the medical profession about this condition
unnecessary conflict and distrust between doctor and patient. Mrs. D
'For years I have been fobbed
off by doctors who have been
trying to make
out that my problems were psychosomatic/marital/trying to get out of
stress, and at the scanning centre I felt intimidated.’
goes on to describe how her consultant was oblivious to her medical
(shown on scans taken years earlier). She then contacted the
enquire about the problem, describing how she 'had to be insistent to
through to her'. The radiologist agreed to look again at the scans,
and, if she
found evidence of myodil and previous conditions, she would make a
'I will not go into the
consultant's reactions, or what he said,
misdiagnoses, etc. I made extensive notes immediately after each one.
not be useful but it has been an alarming experience, and it's ongoing.
are frightened of diagnosing arachnoiditis and of being involved. What
written on the consultant’s reports in NO WAY reflects what
D. then shows the consultants reports before and after she insisted
at the scans. The relevant differences are, from the first report:
was no evidence for any previous problem related to intrathecal
Compared to the second: 'The radiologist submitted a revised report....
did reveal some evidence for local arachnoiditis in the lower lumbar
Mrs. D's story is by no means unique. Mrs. E's experience was far more
Mr. X. did his ward round he was appallingly rude to me in front of the
patients. He screamed and shouted at me.... that 'I shouldn't be
didn't give any reason why!) When he left I cried for 2 hours on the
the radiologist put the needle in my back there was a terrific feeling
pressure rushing from my head and I nearly passed out... I had a severe
and began to see black spots floating in my visual fields. However,
they offered me to stay at hospital, there was no one at home caring
disabled husband and son so I had to go.... My left leg faded away to
really thin and the floaters in my eyes and headaches became worse. I
refused all help from social services despite the fact I had a disabled
and a young disabled child and I couldn't walk. I was refused state
because I had no one medically qualified who'd state the cause of my
considered suicide and only didn't carry it out, because I had my poor,
son reliant on me.
G. P. tried to send me to the A&E to see a consultant
ophthalmologist at P.
hospital, regarding the black things floating and terrific headaches.
Consultant threw me out without examination stating, 'floaters,
learn to live with them.
appointments at the P. hospital were promised, but not received. In the
through the help of my M. P., I obtained an M.R.I. scan at Addenbrookes
hospital. The consultant radiologist who did the scan said, 'We can see
exact cause of your problem.' I was therefore surprised when I returned
hospital to learn from the original consultant, 'there is nothing wrong
your back.' I can still produce a copy of my DHSS claim for mobility
(which was disallowed) where the consultant had told them that, 'the
a private hospital in London obtained the scans from Addenbrookes and
their findings to the DHSS pronouncing the back as inoperable, allowing
mobility allowance. Her tribulations didn't stop there. Her eyesight,
so altered straight after the myelogram, had virtually disappeared in
eye and her G.P. tried to make another appointment at Addenbrookes; but
appointment came. Despite repeated phone calls and letters front he
appointment arrived. It would seem that her previous run in with the
ophthalmologist had not been forgotten. Blind in her left eye, her
beginning to fade she got into a taxi:
go to the eye casualty department with the intention of refusing to
unless they did appropriate tests on my eyes. I sat there 1O hours.
Luckily for me, there was an
American woman doctor on duty and
to our corrupt NHS, she examined my eyes, ordered a fleuroscene
when the yellow dye put in my arm was photographed [it showed] oozing
blood vessels in both my retinas. I was told that I had 'old retinal
haemorrhages, which had caused the deterioration.
problems have been well documented in myodil victims, yet
ignorant of the fact. The point is, not that one or two people have had
experiences, but that, at varying degrees, a very great number of
(if not all) have faced ignorance and disbelief from the medical
6 Litigation Prohibition
last case focuses on the way myodil victims were prevented from
against those responsible for their injuries and poses a question about
victims suffer dreadful physical and monetary hardships because of the
upon them; despite the immoral actions, battery and negligence, against
persons, they are denied compensation: this has been done in a number
and the legal profession have not been blameless here.
class action started against the makers of myodil but it was never
come to court; thousands of victims were denied justice; and the public
has been circumvented as a result. Litigants were forced to withdraw
my case was thrown out by the consultant saying that the surgery I had
the myelogram could have caused the arachnoiditis.'
reason is common, however, even the most superficial questioning by a
solicitor would expose the flaw in this argument. Surgical
myodil induced adhesive arachnoiditis are disparate conditions: though
confused by the medical profession, their symptoms are considerably
paying £500 for the scan and £3000 to the
told me that I would
have to pay up front £37500 and a further £57000
exorbitant costs for myodil victims is the most common reason given,
were the costs so excessive? Here is the explanation to one litigant:
had to arrange for the M. R.I. scans privately and then paid a number
thousands to my solicitor only to be told by them that, if I wanted to
with the action, I would need to find approximately £40000
more later. I
was advised that, unless I was extremely rich, or extremely poor (some
legal aid certificates), that it wasn't worth carrying on.
confused, I asked why I needed to come up with such a sum and it was
that Justice May had made the decision that any litigants had to pay
of research done into this case by the Legal Aid Board. They had spent
million pounds on a study of the case. I argued that this was unjust
atrocious. All of the money used by the Legal Aid Board for the
from the very tax payers who where now being asked to pay for it for
Surely, I maintained, that it was unfair to ask litigants to pay for
made on their behalf, when they had provided money all their working
enable the research to take place in the first place. I asked what
to the research and was it accessible to the public -- after all it is
money that funded it. I was told that unless the money was handed over,
not get used; and that the legal profession were in no way going to
Justice May's extraordinary decision.
legal mischief didn't stop here: with the knowledge that this decision
effectively bar thousands of victims from justice, Justice May also
order that no myodil victims will be able to sue the company after a
date giving litigants no chance to appropriate the evidence obtained by
Aid Board, or to challenge the law.
inequity extended to the public arena too. There were many charges laid
N.H.S. and the medical profession in general, yet victims were barred
compensation from those sources by the Hayman Enquiry, a one-sided
completely devoid of critical argument. The Hayman Report showed
it was used as a reason to prevent compensation·
is another aspect to this case and that is that this is assuredly a
Policy issue: there must be an investigation to prevent such dire
happening again. It must be in the Public Interest to ask:
IS THERE ANY OTHER PLACE IN THE WORLD WHERE SOMEONE IS LEGALLY ALLOWED,
WHATEVER REASON, TO INJECT A KNOWN TOXIC, HIGHLY CORROSIVE SUBSTANCE
INTO ONE OF
THE MOST SENSITIVE PARTS OF THE ANATOMY, WITHOUT THAT PERSON'S CONSENT?
IS THERE ANY SUBSTANTIAL REASON WHY THIS IS NOT BATTERY AND, THEREFORE,
IF IT IS A CRIMINAL OFFENCE, AND IT SURELY MUST BE, WHY ARE VICTIMS NOT
ISN'T IT IN THE PUBLIC'S INTEREST TO CORRECT INJUSTICE AND PREVENT
MYODIL VICTIMS, THERE CAN BE NO JUSTICE WITHOUT A FAIR HEARING AND A
LOOK AT AND REBUT EVIDENCE.